The city of Plantation, Florida, is a delightful suburb of Fort Lauderdale. We are close enough to have access to the beautiful beaches and waterways. However, our location about seven miles inland means that we are far enough away to feel the smug security of a suburban community.
Any picture of our church as in the midst of the emerging AIDS dilemma seemed from the beginning to be slightly out of focus. The church has always had an open view toward bringing the gospel to bear on all sorts of situations and needs. However, being open and being involved are two different things. At best, we in the church expected to be involved from a distance. We certainly never expected AIDS to come to Plantation and to First Baptist Church.
Tom and Ruth
Shortly before Christmas in 1984, one of our faithful members entered the hospital with a persistent respiratory illness. I was out of the city the first few weeks of January but learned, upon my return, that Tom was still hospitalized. I immediately went to see him. I found him in isolation, looking ill and quite thin.
He and his wife, Ruth, said that a group of infectious disease specialists had been called in. Tom had developed a strange variety of pneumonia called Pneumocystis carinii. I wondered, Could AIDS be the culprit? Knowing Tom had once been involved with drugs heightened my fears.
Tom and Ruth are up-front people, and we talked openly about the possibilities. The doctors in Plantation also suspected AIDS and made a referral to the University of Miami clinic for confirmation of the diagnosis.
Tom and Ruth had begun attending First Baptist early in 1981. Just before coming to our church, Tom had gotten involved in the Alcoholics Anonymous program and, as a part of working on his Twelve Step program, decided it was time to get his spiritual life in order. He and Ruth began looking for a church in which they could feel comfortable and be challenged to grow. After considerable discussion, prayer, and searching, Tom made his profession of faith and was baptized into the family of God and the fellowship of First Baptist Church on September 6, 1981. Ruth came with him, moving her membership from another church.
Tom and Ruth quickly made a place for themselves. This was interesting to watch because they were different from the kind of folks who usually join our church. Neither of them were college graduates or part of the more typical upwardly mobile, management level of the Plantation community. Their excitement about their growing faith and relationships within the church community was refreshing, and our church welcomed them warmly.
Knowing where they had come from, especially Tom, made their excitement even more meaningful and contagious. Not only was Tom dealing with the problem of dependency on alcohol, he had also been extensively involved in the drug scene.
A native of Pennsylvania, Tom decided at an early age that life was a giant buffet from which one could-indeed, should-sample at will. He tried it all, including heroin, marijuana, cocaine, alcohol, crack, uppers, downers, and a previous marriage to a prostitute.
Arriving in Florida, Tom settled down to fun in the sun. As a streetwise young man running a charter boat to Bimini, he met a man who offered him a berth on his seventy-five-foot schooner sailing through the Caribbean and to Central and South America. This fellow often left Tom in charge of the boat while he flew back to the States.
During his time in South America, Tom learned quite a bit about the drug trade. When he returned to the States, he was able quickly to find connections and put this new knowledge to work. His new business not only filled many hours but also satisfied much of his need for thrills, excitement, and danger, and he was making big money, as well.
After several of these adventures, he met Ruth, and they began to date. Ruth did not know the details of Tom’s life, but she became caught up in his excitement. They dated for about a year and a half and then married. They began to struggle with the process of settling down. For someone like Tom, this was not easy. Not long after they were married, Tom’s drinking and drugs began to get out of control. Ruth, to use her words, “fell apart.” She got involved in Al-Anon, part of the Alcoholics Anonymous organization designed for the nondrinking spouse. Slowly, Ruth’s life began to regain some normalcy. Tom, in the meantime, played with AA, drifting in and out of the organization.
After several roller-coaster years, Tom decided to get serious about AA’s “Twelve Steps” program. Out of this experience, he and Ruth began to feel the need for a more personal expression of their faith in God. And so they came into our lives at First Baptist.
Not only did they endear themselves personally to many people in the congregation, they began to assume responsibility. Ruth started teaching in our children’s ministry. Tom was asked to serve on the building and grounds committee. This provided a perfect outlet for his creative and ingenious abilities; there was not much that Tom could not do with his hands.
During this period of spiritual growth, the allure of his former life would sometimes overcome Tom, and he would slip back into old habits. Even during these up-and-down times, his commitment to his Lord, himself, and his church remained a constant force. In reality, Tom experienced what most of us experience; he felt more firmly rooted in his faith on some days than on others. The only difference was that Tom’s dependency problems made the process more acute and complicated than for most of us.
Knowing all this made the diagnosis of AIDS especially hard to accept. Since the virus can lie dormant for as long as nine years, it is possible that Tom was exposed before he ever came into the church and the family of God. Or the exposure could have happened during one of his times of struggle after his baptism. Either way, it seemed grossly unfair, because Tom and Ruth were both trying so hard to get things to work right.
From the very beginning, Tom and Ruth both handled the news of AIDS with a great deal of strength and faith. There was a quiet kind of acceptance on their part that when you choose to dance, the piper must be paid.
When he was discharged from the hospital in Plantation, Tom asked me to go with him to Miami for confirmation of the diagnosis; he wanted his pastor with him for support and for understanding. Of course, I would. In addition to being there in a pastoral role for Tom and Ruth, I wanted some answers of my own. Perhaps some time with the doctors at the AIDS clinic would also be of help to me.
Miami’s Advice
As I drove Tom and Ruth to Miami, the atmosphere was heavy with what we all knew was ahead. The doctors in Plantation had been pretty definite in their diagnosis, but the needed confirmation could only be made through the clinic at the University of Miami.
A friend and fellow church member, Kay, who worked in cancer research in the same general area of the AIDS clinic, had agreed to guide us through this unfamiliar territory. As we walked toward the entrance to the clinic, I prayed for strength for Tom and Ruth and also thanked God for placing someone like Kay in their lives.
As in most clinic settings, waiting is the first step. As we sat in the reception room, Kay explained in detail how the results of the test would be stated and what they would mean. She helped us understand how the AIDS virus attacks the immune system. To have it all explained so clearly was reassuring. At least we had some sense of what the doctor would be talking about.
Finally, Tom went in. In a short while, the doctor called for Ruth and me. Dr. Dickinson, one of the leaders in the AIDS research at the university, dealt with both of them gently but clearly. He carefully outlined what was happening in Tom’s body, and he talked specifically about what would happen when the body could no longer fight disease and infection. At the same time he was clear about what doctors did not know and what research was being done. This small word of hope, however dim, was grasped by Tom and Ruth in the way that drowning victims grab for a life ring.
Dr. Dickinson talked about the changes in their lifestyle that would need to accompany the presence of AIDS. The most obvious change would be in their sexual expressions to each other. Condoms would be required, and they would have to refrain from deep kissing so as to minimize the risk of exchanging body fluids. Since injected drugs were not now a part of their lives, precautions in this area were a moot point.
The normal patterns of living together-eating, sleeping, using the same bathroom-all were put into perspective. Tom had been especially afraid of communicating the disease to Ruth or to her daughter, who lived with them.
It was so good to hear the doctor say that outside of the exchange of body fluids or blood, there was virtually no risk of infecting anyone else. Their anxiety dropped visibly. One area of concern, however, remained very high for them both, the fear that Ruth had already been infected through their normal sexual activities.
Tom asked Dr. Dickinson about Ruth and whether he had unknowingly infected her. Dr. Dickinson said it was certainly a possibility, and there was a test Ruth could take to confirm whether or not the AIDS virus was present in her system as well. Ruth said quietly that for the time being she was fine and not interested in taking the test. Rather than run the risk of confirming that she too might someday die with AIDS, she felt it was better not to know. Dr. Dickinson was sensitive to her feelings and simply indicated that whenever she wanted to have the test made, it could be done. The decision was up to her.
I was deeply concerned about how to balance the reality of AIDS hysteria, the confidentiality necessary to protect Tom’s job, and this couple’s need for emotional and spiritual support from the church community. I was optimistic about the overall response of our congregation, but there was a real risk of Tom and Ruth’s being alienated from some of the people they loved and from whom they needed continued support.
I voiced my concern. With all the authority and presence that medical people can muster, Dr. Dickinson told me that I had a responsibility to educate the congregation about AIDS. He told me to let the congregation know I was involved with AIDS patients and was not afraid, and they did not need to be afraid either. I had to risk being the recipient of AIDS hysteria myself. Perhaps there would be people who would not come to church anymore when they found out about my ministering with AIDS patients. Perhaps there would be people who would not want me to visit in their homes or hospital rooms. There was the distinct possibility they would see me as an AIDS carrier.
I tried to digest all this and at the same time make the doctor understand the peculiar dilemma I faced. I wanted to be a good pastor to Tom and Ruth, yet not risk losing the congregation. Dr. Dickinson read my agenda immediately.
“Look, Reverend,” he said. “I am not asking you to do anything that I am not doing-relating to AIDS patients in the context of my profession and then talking openly about it as a means of education. It’s the only way to go, the only way. You need to know that I believe what I am telling you so completely that I am literally staking my life on it. Because if I am wrong, Reverend, I’m dead wrong.”
The ride back to Fort Lauderdale was quiet. Tom was processing the reality that he was going to die with AIDS. Ruth was dealing with that fact, plus her own need to decide when she would have the test to see if she had contracted the virus also. I was aware of their thoughts, but most of my energy was focused on the burden that Dr. Dickinson had laid on me: how to handle this in the congregation.
We agreed that at this point, since Tom was still well enough to work, confidentiality was a must. As a crane operator belonging to the local union, Tom’s disclosure that he had AIDS would mean sure and swift dismissal. For Tom to become unemployed would mean loss of insurance benefits as well as loss of income. The day would come soon enough when he would not be able to work.
This decision could be called “survival ethics.” I believe in honesty and openness. However, the demands of this situation-Tom’s need for income in order to survive and pay for medical treatment-meant that not fully disclosing all we knew was the only alternative. When Tom could no longer work, confidentiality would no longer be an issue. It would also be at that point, we all agreed, that he and Ruth would really need the help of the congregation.
In the weeks that followed, Tom and Ruth both went about their normal workdays, with the only differences being Tom’s constant tiredness and his adjusting to a load of new and different medications. From a distance, they looked fairly normal. However, because of my closeness to them, I knew they were dealing with some heavy concerns.
Tom expressed a strong need to talk his way through what he was feeling. I made a covenant with him to meet regularly to do this. Dealing with terminal illness is not new to any experienced pastor. The complexities of AIDS began to fade into the background in the presence of the reality that here was a human being who was dying.
I was still faced with Dr. Dickinson’s piercing words about dealing with the public side of AIDS, and after a great deal of prayerful thought and conversation, I went back to Tom and Ruth with a suggestion. I had concluded that I needed to preach from time to time on the subject of AIDS in the hope that my sermons could be used by God as a part of the healing process that families and churches and communities all needed to experience.
I told Tom and Ruth that I would always let them know in advance when I was going to mention AIDS in my sermon so they could decide whether they wanted to be present. And I would make personal references to being involved with AIDS patients without specifically referring to Tom and Ruth.
In the weeks and months to come, my involvement in supporting Tom and Ruth took me to the AIDS center in Fort Lauderdale, where support groups met for AIDS patients. Tom and Ruth went to these meetings, and I went with them. I began to get involved in visiting AIDS patients in the hospital and in their homes. All this provided an excellent background for me to draw on in sermons. This way, I was able to provide what I felt was a real ministry and at the same time deal responsibly with the need for education in our church.
The Pastor’s Preparation
I quickly realized that if I was going to continue to be a helpful pastor to Tom and Ruth, I would need some preparation of my own.
My first step was to learn all I could about the disease itself. I began to read everything I could find in order to educate myself on Acquired Immune Deficiency Syndrome. I started a file, which has grown to be several files. One file contains medical information. Most of these have a common element: data from the Centers for Disease Control in Atlanta, Georgia, which I have found helpful in enabling me to offer factual information in the many conversations where the subject of AIDS arises.
Much of my education has come from the medical community. The doctors with whom Tom and Ruth met proved to be an invaluable source of information. You might begin by discussing the disease with your own medical doctor. In addition, the local Public Health Service and American Red Cross office can offer some helpful material. The American Red Cross has an excellent educational film that is available through local offices.
I discovered, however, that intellectual preparation was only the beginning. There is also the task of being emotionally prepared. This part of the journey is the most difficult.
Some of my early fears were related to the question of risk for me and my family. Even though I was told otherwise, I was still shaken at the prospect, however slight, that I might be exposing myself and my family to a disease that, if contracted, would be fatal.
I knew the facts. Still, some unsettled fear was present, if I was honest enough to admit it. I began to dwell on the very small percentage of persons infected with AIDS who fall outside of all the high-risk behavior groups. While the medical experts do not agree on the exact percentage, they all agree that, for a very small number of AIDS cases, the source of infection has not been documented. My awareness of this number, however small, kept the fear alive and growing. Perhaps there are ways that AIDS can be contracted that the medical community just does not know about yet, I thought.
Yet to be able to respond to Tom or Ruth or anyone else I might encounter in ministry, I was going to have to deal with those feelings. I talked with my wife and children about the differences between what I knew and what I feared.
I tried to keep a sense of balance. At the same time I wanted to be honest with them. My involvement meant that if there was any risk involved, my family would be exposed to the risk as well. Their response was serious but encouraging. They were grateful to be included in the discussion and not taken for granted. Then my son helped put things in perspective. He reminded me that there was risk involved in most of what we do, such as driving on I-95. His final statement was the clincher.
“Well, Dad, I guess it comes down to whether or not you think Tom and Ruth are worth the risk. Personally, I do. It really does not bother me to know that you are involved with people with AIDS.”
We agreed as a family that I had their blessing and that they were not overly concerned about my being involved. The “rite of passage” in my journey with AIDS helped me process this part of the emotional baggage that goes with it.
Then I would get caught up in childhood memories of stories about a missionary, Lottie Moon, who went to China and died there of starvation because she gave her food to the children around her. I was not ready to be added to the list of martyrs who give their lives in sacrificial ministry. Martyrdom is easy to preach but difficult to practice. I finally concluded that while there might be some risks, the facts were much more convincing.
There is yet another dimension to the emotional side of this journey. One cannot deal honestly with someone who is terminally ill without at some point dealing with one’s own mortality. It is difficult to see others die, especially young adults. Even though we know about the naturalness of death and all the promises of eternal life, we are still brought up short when we really have to face the fact that we will not live forever.
I found this particularly poignant with Tom and Ruth. They certainly had to live with a different reality of death than most of us do. As a result, they carefully reordered their lives and their priorities. Tom literally got his house in order with each passing week. He was concerned that a new roof be put on their home and that Ruth have more dependable transportation before he died. He made sure a current will was drawn up. One of the most painful parts was our visit with the local funeral director to make burial arrangements. It was important to Tom to arrange this himself so Ruth would not have to deal with the details. He needed to care for these concerns so that the time he had could be quality time for him and Ruth.
Bringing It into the Church
It was several months before I referred to AIDS and my involvement with it in a sermon. Each time l made such a reference, I watched and listened closely to the response from the church. There was never, to my knowledge, a negative reaction. If anything, there was a response of gratitude on the part of the congregation that I, on behalf of our religious community, was involved.
Sometimes the reference was to my involvement with those related to our own church family. Other times, the mention was to my work with those in the larger community who were dying with AIDS and had no other pastoral resources.
From this vantage point, after almost three years of involvement, it is easy to look back and wonder why I spent so much time worrying. However, when I was faced with questions at the beginning of this journey, they were very important to me.
One Sunday afternoon, Tom called me to express his worry about the load Ruth was carrying. I dropped by the house. It was obvious from one look at Ruth that she was stressed out. Not knowing what else to do and not having anything specific to offer, I asked what we could do to help her. With great emotion, she began to talk about her need to have some people to talk to who knew what was going on.
While she had plenty of people around her with whom she could do normal kinds of things, they did not-and, in her mind, could not-know that Tom was dying with AIDS. She found herself constantly thinking, when around friends and neighbors, that if they really knew what was going on, they would not want to be around her at all.
As I saw her heartbreak, I realized there was indeed something we could do for her. Because it seemed so important for some people to know what was going on in Ruth’s world, I asked her to give me the names of several women at church with whom she felt comfortable. With her permission, I would invite them to become part of a very quiet support system.
She gave me the names of five women whom she and Tom agreed I could contact. I called them and asked them to come to my office after the service that Sunday evening. I did not go into detail on the phone but stressed the importance of what we needed to talk about. Each of them agreed, no questions asked, although I sensed curiosity running high.
As soon as the service was over, I met them in my office and gently disclosed what Tom and Ruth were dealing with. I told them what Ruth needed and how I felt they could be of help. I outlined three things:
First, they needed to go home and talk with their families and secure their blessing. Tom and Ruth had agreed that this was important, even though there was some risk involved.
Second, I stressed how important confidentiality was at this point. It was of paramount importance that no one else in the church besides them and their families know all the facts. Later, when Tom was unable to work and confidentiality became less of an issue, they could then relax in this area.
Third, I stressed that they needed to be prepared to go with Ruth for the duration. This was no four- or six-week assignment.
By the providence of God, our deacons were meeting in the next room with a guest, a friend from Hospice Care, who was doing some training with them in ministry to those with terminal illness. Polly and her staff had already been involved with AIDS patients. As soon as she was through, I asked her to spend a few minutes with these women, telling them specifically about the medical aspects of AIDS. I knew she could say things this group of women needed to hear in a way I could not.
I felt the presence of God in that room. In a significant way, Ruth was about to experience the Word becoming flesh for her. In an equally significant way, these women were about to discover ministry in ways they had never known before.
After our discussion, the room was very quiet. Then one woman looked up and said perceptively, “Well, Pastor, I don’t think this is going to be just a ministry of green beans.”
How right she was! As important as is the ministry of taking green beans when and where needed, there was no way to measure the importance of the response to the call of God to this ministry.
The women began their task in a beautifully quiet way, as Ruth’s own description shows: “The very next day they all had contacted me in their own special way. A couple of them phoned me. One came by with a flower and a card. It was a real relief to finally have someone who knew what was going on. Each of these ladies had qualities I admired. They were all special to me in their own ways.”
What Ruth discovered was a community of integrity in the strong name of Jesus Christ. Here were several women whose very presence affirmed normalcy in Ruth’s life. They knew all the facts and chose to help. No longer did Ruth have to deal with the fear of rejection.
That was in 1985. Later on, when Tom’s condition could no longer remain secret, the rest of the congregation was informed. Even though Ruth’s needs are different now, this group still stays in touch. Their schedule is a bit more flexible, but their significance is nonetheless important. Ruth has been the grateful recipient of the grace of God through the quiet ministry of these women.
Caring for the Caregiver
Dealing with AIDS patients and their families over an extended period of time can be particularly draining, as I learned after walking with several families through the valley of death from AIDS. Subtle depression creeps up, and before you know it you can find yourself overwhelmed.
In ministering with Tom and Ruth, I invested a tremendous amount of personal energy. As the time for his death neared, I began to realize that I was almost at the end of my own emotional resources. After all we had been through, he was going to die anyway. The need to conduct a funeral and be a strong spiritual leader was almost more than I could handle. Where could I go with my own pain? Who was going to care for the caregiver?
In the midst of my grief, I did two things that turned out to be redemptive. First, I talked with a friend who is a counselor. He provided me with some clearer vision of my abilities and my limitations. Second, I turned to the men and women of our deacon council and requested their prayers for me as we walked through the death experience with Tom and Ruth. I also shared this concern with the church family as a whole in our midweek prayer service.
Many ministers might feel that such a move is a mistake. To share one’s weaknesses or fears would seem to undercut one’s ability to function as a spiritual leader. I found quite the opposite to be true. In fact, if anything, my leadership was enhanced by honestly sharing my needs as well as acknowledging the needs of others.
The End, and a New Beginning
Tom went through five bouts of Pneumocystis carinii pneumonia before dying on June 2, 1987. On more than one occasion, Tom told me that being part of a church community that chose to accept him as he was, AIDS and all, was literally life-giving.
We miss him terribly. Our lives will never be the same after having known this man and his journey. Part of his calmness and readiness for death came from the security he felt in knowing that Ruth would continue to be a part of this community of faith.
Ruth expressed her appreciation in a statement made at the close of worship one Sunday four months after Tom’s death. She concluded her comments by saying, “You have showed that you are not afraid to deal with whatever issue comes along and deal with it all the way, the same way Jesus would have. And today I come to celebrate a new birth, and I want all of you to join in my celebration. After finding myself immobilized, unable to go on with my life or even to finish mourning, I finally found the strength and courage to be tested for the HIV virus. Much to my surprise, my test results were negative. With this new lease on life, I come here today to tell you all how much I love you and to thank you all for loving me.”
– William E. Amos, Jr., is pastor of First Baptist Church in Plantation, Florida.
Copyright © 1989 by the author or Christianity Today/Leadership Journal. Click here for reprint information on Leadership Journal.
